Tardive dyskinesia?

[Joy at Home]

dd11 has been on Risperdal for six years. She has a lot of special needs and risperdal as used to take the edge off some of her autistic symptoms. She has for a long time had twitches and facial grimacing, but with all her needs and her cognitive disability, I saw it as part of her neurological makeup and let it go. Lately, however, it has become worse and for the past couple of days a facial tic developed that she does all day, along with grimacing. It's really a pathetic site, though it doesn't seem to bother her. She closes her left eye and curls her face up in a grimace. I started researching possible side-effects of her medical tonight and tardive dyskinesia jumped right out at me. It fits her to a tee.

 

The sad thing is that it could be permanent even if we discontinue her meds. What have I done? I feel so sad right now I just want to cry . . .

[merry gardens]

:grouphug:

I don't know much of anything about what you wrote, but I offer my prayers for you and your daughter.

[GraceinMD]

it could be permanent even if we discontinue her meds.

 

I'm so sorry, Momto5girls! I have a number of (geriatric) patients on Risperdal (or similar meds), and TD certainly *can* be a side effect. But please don't beat yourself up too much, since Risperdal is an accepted and often necessary medication for children with autism - and like most meds, there's always a risk-benefit balance. Also, even though the movements can be irreversible, they are not *always* irreversible.

 

Have you followed-up with your daughter's doctor? I would expect that he (or she!) has been following any (what we call) abnormal involuntary movements. There are *other* meds that can be given to counteract some of the TD movements, but you should discuss this with your daughter's doctor asap. Also, depending on exactly WHY your daughter is needing an atypical antipsychotic agent like Risperdal, there may be substitute meds she could take that would be as effective, yet with fewer side effects --- meds that we weren't prescribing 5-6 yrs ago (so again, please don't beat yourself up - it sounds as though you are doing the best you can with loving intentions).

 

You may have already found this sort of info on the web, but there are some other links at the bottom that might be helpful:

What is Tardive Dyskinesia?

Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may appear as though the patient is playing an invisible guitar or piano.

 

Is there any treatment?

There is no standard treatment for tardive dyskinesia. Treatment is highly individualized. The first step is generally to stop or minimize the use of the neuroleptic drug. However, for patients with a severe underlying condition this may not be a feasible option. Replacing the neuroleptic drug with substitute drugs may help some patients. Other drugs such as benzodiazepines, adrenergic antagonists, and dopamine agonists may also be beneficial.

 

What is the prognosis?

Symptoms of tardive dyskinesia may remain long after discontinuation of neuroleptic drugs; however, with careful management, some symptoms may improve and/or disappear with time.

 

What research is being done?

The NINDS conducts and supports a broad range of research on movement disorders including tardive dyskinesia. The goals of this research are to improve understanding of these disorders and to discover ways to treat, prevent, and, ultimately, cure them.

 

National Institute of Mental Health (NIMH)

National Institutes of Health, DHHS

6001 Executive Blvd. Rm. 8184, MSC 9663

Bethesda, MD 20892-9663

Tel: 301.443.4513/866.615.NIMH (-6464) 301.443.8431 (TTY)

Fax: 301.443.4279

 

National Organization for Rare Disorders (NORD)

P.O. Box 1968

(55 Kenosia Avenue)

Danbury, CT 06813-1968

Tel: 203.744.0100 Voice Mail 800.999.NORD (6673)

Fax: 203.798.2291

 

WE MOVE (Worldwide Education & Awareness for Movement Disorders)

204 West 84th Street

New York, NY 10024

Tel: 212.875.8312 866.546.3136

Fax: 212.875.8389

 

Source: National Institutes of Health; National Institute of Neurological Disorders and Stroke

[iammommy]

Have you called her doctor? I would call right away as he might want her to stop the Risperdal immediately or see her right away. PLease let us know what happens. This must be so scary.

 

Nan

[Joy at Home]

Thank you so much for your replies. Grace, your information was very useful.

 

I did call our primary care physician, whose nurse called back and told me to contact her neurologist. She doesn't have a neurologist, so I'm going to call CHOP in the morning, but they take so long to get in.

 

She used to be followed by a child psychiatrist, who managed her meds. But he left the practice and I asked our primary care doctor to reorder her meds. So no one was really overseeing her meds except our family doctor. Now that she's having problems I'm scurrying to try to get to someone who actually knows about this sort of thing. I'm going to call our child psychiatrist practice in the morning and ask to talk to someone asap and explain the situation. I need to know right away how to go about weaning her off the medication.

 

She is non-verbal and I have no idea how this is affecting her. I know it is not painful but it has to be disturbing to her. She has so much to deal with without another challenge in her life.

 

Thanks for your thoughts and advice.

Blessings,

Lisa

[GraceinMD]

So no one was really overseeing her meds except our family doctor. Now that she's having problems I'm scurrying to try to get to someone who actually knows about this sort of thing.

 

Well, her family doctor (and I am one, so know the training that FPs have....) SHOULD know enough about this to either:

1) (at minimum) make an adjustment to the med asap, or

2) make an adjustment to the med after calling (right then and there) a child psychiatrist or pediatric neurologist for an interim recommendation, or

3) get you in to see someone at CHOP sooner rather than later. (In fact, I would specifically request that your family doctor CALL FOR YOU and get an appointment - it's sort of like taking an ambulance to the ER gets you in immediately, whereas walking in off the street gets you 8 hrs sitting in the waiting room! This is a situation where you should not have to wait for an initial evaluation.)

 

I hope it goes well - it sounds as though you're on top of things!

[Joy at Home]

Well, her family doctor (and I am one, so know the training that FPs have....) SHOULD know enough about this to either:

1) (at minimum) make an adjustment to the med asap, or

2) make an adjustment to the med after calling (right then and there) a child psychiatrist or pediatric neurologist for an interim recommendation, or

3) get you in to see someone at CHOP sooner rather than later. (In fact, I would specifically request that your family doctor CALL FOR YOU and get an appointment - it's sort of like taking an ambulance to the ER gets you in immediately, whereas walking in off the street gets you 8 hrs sitting in the waiting room! This is a situation where you should not have to wait for an initial evaluation.)

 

I hope it goes well - it sounds as though you're on top of things!

 

Wow, Grace, I didn't know you were a doc! Thanks for the sound advice. Believe me, I'll be making many phone calls in the morning.

 

Blessings,

Lisa